Please join us for our third annual gathering of the genetic ALS and FTD community in North America hosted locally by the ALS Network.

Thursday, September 24th, through Saturday September 26th, 2026
Main Meeting Spot: California Endowment Conference Center, Sacramento California

Following the success of our first two community summits (Chicago in 2024, Philadelphia in 2025) we are coming back together in person. With an agenda focused on support, expanding at risk care guidance, and how to be an impactful advocate for our community, participants will walk away ready to meet the challenge of the new, pro-active era for our community health. Speakers will include researchers, clinicians, genetic counselors, social workers, and, of course, End the Legacy advocates.

As with our prior summits, we are ensuring the barriers to participate are low. Embracing an aspect of one’s identity as a person at risk for genetic ALS or FTD can come with shame and fear. But the moment you can commune with others in the same boat as yourself, that shame and fear can be transformed into determination and commitment. To help bring individuals in, we are offering, for a nominal 75$ registration fee, access to the full summit and meals, hotel coverage, and need based travel subsidies. Investing in the community is a decision we do not take lightly.

NOTE: ATTENDANCE IS CAPPED SO PLEASE RESERVE YOUR SPOT EARLY!

Hotel Coverage: We are pleased to offer attendees who are not local to Sacramento hotel coverage for Thursday and Friday night. We want to be as economical as possible. If you are attending with another registered guest and you would be mutually willing to share a hotel room please let us know on the registration form. If you need travel support beyond hotel coverage for Thursday and Friday to be able to attend, please email your request to: info@endthelegacy.org

Links to our prior events:
https://www.endthelegacy.org/communitysummit2025

https://www.endthelegacy.org/communitysummit2024

End the Legacy's 2026 Genetic ALS & FTD Community Summit

Local Host ALS Network - September 24 - 26, 2026